Birthday Girl!

You know I wouldn’t miss updating you today. Baby girl is 3!!! Yes, three!!! To think we are here at this point is fantastically unimaginable. Praise the Lord, Alyssa is stable, happy, and very much an essential part of our family. But you know all that. What you may not know is that this is the year of transition for Alyssa and it frankly it already has been such for our entire family.
Once again I find it difficult to fully express the deep sense of appreciation we have for the early intervention services (birth to age 3) provided through (mainly) the Cerebral Palsy Association. Their services came to a close this week. This means the PT, OT, teacher, and clinical nurse that have worked with Alyssa pretty much since she was an itty bitty butter bean bid her a fond farewell. Not only did they treat Alyssa, but they were so supportive of our family~ helping me to grow as a special needs mom. They were great listeners, provided guidance, support and more. Most importantly though the left me {us} with the sense that they each truly cared for our girl; that above all else has been meaningful.
Not one of them placed limits on Alyssa’s abilities or potential but challenged her and encouraged her to move forward and work hard. God was good in providing each of these individuals in Alyssa’s life, because not all therapists, clinicians would facilitate the needs of a baby-toddler (whom isn’t expected to be much by definition of her diagnosis) in such a resolute albeit loving manner. It went beyond just doing their job; they made me feel like they genuinely wanted to set in motion the thought rather the action of Alyssa can do and will do…truthfully they did just that. These ladies came into our home weekly, and participated in helping to make Alyssa stronger, taught her how to play, and manipulate toys etc. They did with Alyssa many of the things doctors told us she would never do! It wasn’t a concerted team approach outlined with goals and a treatment plan that made the difference; no these are amazing therapist, women who have cultivated approaches that in meaningful ways with personal style did promote growth-strength in a child {and family} beyond expectation. Thank you Kris, Patti, Francis, Kim and Robin more than words can say THANK YOU!!!
We could foolishly focus on the “failures” of Alyssa’s body and mind giving way to flawed notions that Alyssa is less than because she isn’t the emblematic 3 year old. Alyssa doesn’t talk like a typical 3 year old; she babbles like a 9 month old. On her own Alyssa doesn’t sit up for very long, and can’t stand, she needs support to do these things the average 3 year old would do. Unlike many other 3 year olds, on this her birthday she won’t tear through the wrapping paper to see what gift lay in wait; rather with expectant eyes will watch her siblings do it for her or with hand over hand assistance try it herself. To dwell on what could have been is a waste of energy.
We’d rather celebrate the gift of a daughter whom Christ is using to teach us faith, humility, compassion, patience, courage and most of all love. (Psalm 25 1-2,4-10) We will celebrate her engaging smile, joyful personality, and her squeals of delight. We will sing with her, play and in the end enjoy all the nuances that make her dear to us. In three years Alyssa transitioned from a newborn labeled incompatible with life, to an infant hospice care patient destined to die; to a medically fragile baby in need of multi disciplinary services; into a medically involved toddler and now a special needs pre-school child. As a Pre schooler, she will receive services through our local intermediate unit. This means new people to impress *wink*wink*. One thing I am learning in this journey is that your child has to have a willingness to prove herself to others, and Alyssa does. Alyssa will need to show her stuff to this new group of supporters and again break the preconceived notions attached to her diagnosis/cognitive level. I will at another time explain the particulars of how preconceived ideas affect a child with cognitive and physical issues. In the meantime; Folly has no place here, she is busy trailblazing and we are busy trying to keep up.
Today some people will assemble in eagerness for a fictional story about a young man who may or may not “save” his “people” from the evil that surrounds them. There are those who celebrate this fictional young man for his remarkable character; they revere his power and abilities even though throughout this illusory tale he is shown to be faulted; at times selfish and short sighted. I admit, I too have taken pleasure in the entertainment of the unfolding fairy-tale as it is quiet a story. Today chronicles the end of his journey whether he succeeds in saving his people or not his story ends. Anyone of us can witness the recounting of this story for about 10 bucks or so at the local Theater.
Today Alyssa’s birthday can highlight another story. A true account, the story of Jesus; for His power, His goodness, and abilities are evident in her miraculous life. For FREE you have already witnessed what Jesus did and benefitted from His saving grace. He saved His people and throughout his journey remained faultless, caring, and inspired notwithstanding He died so that His people could live and yet his story continues. As we celebrate Alyssa’s birthday, I cannot ignore the fact that God the author of life continues His story through every breath she takes, and every memory we make and in every heart that chooses to embrace in faith what is. What is, is this: I praise the God of grace; I trust his truth and might; He calls me his, I call him mine, my God, my joy, my light. “Tis he who saveth me, and freely pardon gives; I love because he loveth me, I live because he lives.” ~ Horatius Bonar
HAPPY BIRTHDAY ALYSSA!!! We love you!
By the way Alyssa is now a whopping 28lbs is 2’ft 7” tall. She is wiggly and giggly. Today of all days she has started with a summer cold (sneezing runny nose) Please pray that she overcomes this easily and quickly. Alyssa is a few weeks away from her major (VEPTR) back surgery (to correct her scoliosis) and we really don’t want to have to reschedule or have any other unnecessary complications. I will be able to update more as August approaches. We thank all of you who continuingly keep Alyssa in thought and prayer. Love to you all from Alyssa and all of us!!

Happy Easter!

HAPPY EASTER!!

It certainly been a long winter! Since January Alyssa has been managing and getting over some difficult respiratory concerns. The last being just a week ago. Thankfully we have the equipment to mimic a lot of what the hospital would do and her doctors provided clear instructions and made themselves available when questions arose. We are now glad to see the breeches of sunlight and feel its' warmth on our backs. Best of all, Alyssa is well and all smiles!

The past few months varying members of our Trisomy 18 community have been dealing with chronic health issues with little resolution, ongoing sickness with viruses, and sadly the loss of several little ones. It's difficult to express the level of respect I have for families that with grace and love prepare to welcome a child they know ahead of time will likely be born "sleeping". I often think boy we had it "easy", Alyssa's diagnosis was a surprise for us ( we did not have certain stresses that a diagnoses in utero may bring on). Simply put the courage and commitment a mother and father (and family/support system) take on, to celebrate the life within the womb through the birthing process, and upon that child's arrival whether his eyes are open or not...is beautiful. I don't want to minimize that very real guttural experience to not see the light of life in your newborns face or seeing a life extinguish shortly after birth. However as a bystander, with a child whose own journey is fragile I am encouraged by their strength. Through their grief they found joy, in their hope love flourished, and because of their grace many have been humbled. These babies regardless of their time here on earth enrich the lives of those who love them and those of us who come to know his or her "story".

As a T18 parent, hearing of several losses in a short time period it is difficult emotionally. Especially if your own child is dealing with a health stress's like frequent hard hitting respiratory issues. This is when it helps to talk with other mothers (fathers, caregivers). Not only is it nice to be uplifted by someone else, but it is very healing to lift someone else's spirits up. The ability to share information, or experiences goes a long way. If you are coming across this blog and know of a family that has a child diagnosed with Trisomy 18; please let them know they are not alone!! We are out here and have a rapidly growing kind-hearted Trisomy 18 community. In fact a Trisomy 18 mom is creating a map to indicate where various families are located; in hopes that support can be found not only on-line but locally too. To get added to this map or if you'd like more information; please contact Jill at southerngirl72j@comcast.net

On a very upbeat note, yesterday we along with 3 other Trisomy 18 families were able to meet face to face at an event hosted by Variety Club of Philadelphia. This was a day at Sesame Place for families with special needs kids, and we 4 families decided to make the trip. I am still getting my mind around the fact that all our kids were there. When I have permission from all the parents I will post pictures, but the oldest was a cutie-pa-tootie 5 year old girl, followed by our star Alyssa at 32 months, next a sweet girl at 28 months and an adorable 24 moth old boy. Each of our kids were as different as could be as far as health concerns, a milestones but then again there were some commonalities too. It was just great to meet!! We hope to do it again and add to the group as we know there are others out there not to far away.

So that's been our month in a nutshell. Miss Alyssa despite her repeated sickness has kept up her weight!! She is becoming more active with this increased weight, kicking and rolling more. She has picked up a size or so in clothing and had to have her back brace refitted. We are on the track of planning surgery for her scoliosis, that is a blog segment in and of its self . Our hope is that this will be an uneventful spring and summer health wise and full of fun and smiles. I'll post some additional pictures of our day to day; until next time!!